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Frustrated

13

Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Have to laugh not cry

    So I’m slumbering in my relatively new bed (thank God my husband is at the shore) when I feel wet. I’m like “what the hell?”  I jump (well sort out of) out of bed and urine is pouring out of my pee bag. Some how the little valve to empty it had got turned in my sleep. Meanwhile pee is pouring on the floor and the bed and me are soaked. It’s 3:00 in the morning. I clean the floor, rip the sheets and heated mattress pad off my new mattress and thank God it didn’t stain my mattress. But full clothes change and stuff in the washer. I think I’ll spend the rest of the night on the couch. Nobody told me this could happen! Ah, the trials of a pee bag. I’ll keep you posted. I see the endo today. Curiious his advice on how to control diabetes and the desperate hunger of the Megace. Onward and upward ladies. 

  • Jairoldi
    Jairoldi Member Posts: 221

    Have to laugh not cry

    So I’m slumbering in my relatively new bed (thank God my husband is at the shore) when I feel wet. I’m like “what the hell?”  I jump (well sort out of) out of bed and urine is pouring out of my pee bag. Some how the little valve to empty it had got turned in my sleep. Meanwhile pee is pouring on the floor and the bed and me are soaked. It’s 3:00 in the morning. I clean the floor, rip the sheets and heated mattress pad off my new mattress and thank God it didn’t stain my mattress. But full clothes change and stuff in the washer. I think I’ll spend the rest of the night on the couch. Nobody told me this could happen! Ah, the trials of a pee bag. I’ll keep you posted. I see the endo today. Curiious his advice on how to control diabetes and the desperate hunger of the Megace. Onward and upward ladies. 

    Oh my!

    What a way to wake up! Sounds like you handled it with your usual aplomb. I keep a waterproof/resistant mattress cover on all of our beds. I get them at the furniture store so they aren't plastic.

  • derMaus
    derMaus Member Posts: 558

    Have to laugh not cry

    So I’m slumbering in my relatively new bed (thank God my husband is at the shore) when I feel wet. I’m like “what the hell?”  I jump (well sort out of) out of bed and urine is pouring out of my pee bag. Some how the little valve to empty it had got turned in my sleep. Meanwhile pee is pouring on the floor and the bed and me are soaked. It’s 3:00 in the morning. I clean the floor, rip the sheets and heated mattress pad off my new mattress and thank God it didn’t stain my mattress. But full clothes change and stuff in the washer. I think I’ll spend the rest of the night on the couch. Nobody told me this could happen! Ah, the trials of a pee bag. I’ll keep you posted. I see the endo today. Curiious his advice on how to control diabetes and the desperate hunger of the Megace. Onward and upward ladies. 

    The good times just keep on

    The good times just keep on rolling, don't they? Dear god, you'd think they could give you some warning or instructions or SOMETHING - like maybe slapping duct tape over the valve when you go to bed? Or putting the whole thing in a larger ziploc and zipping it right up to the edge of the tube? I'm continually amazed at how little patient education takes place these days, it seems like we're just turned out into the world with our treatments/appliances/prescriptions/surgeries/whatever and left to bumble our way along. I know I'm an old fart, but really, truly...I DO remember when things were better organized !  Hugs and dry nights to you, dear Cheese !!!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    QC - oh boy.  I'm with

    QC - oh boy.  I'm with derMaus, wishing you a DRY NIGHT.  

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    The hits just keep on coming

    So now the valve on my bag keeps getting plugged with little clots because of course my urine is still the color of Hawaiian Punch because of all the trauma. So this is another challenge. I’ve tried to get an extra bag but apparently this is a newer one and none of the medical supply stores here have it. Of course, I was told I can drive up to Hackensack to pick up an extra bag. Why didn’t they give me one?  Of course they won’t mail one to me. And Medicare won’t cover the cost (about $30) of this particular bag even if I could find one. Of course I have the option of buying a box of 5 from the manufacturer. 

    So I thought this would happen, my endo put me on insulin. Just another thing, huh. I’m not terribly uncomfortable since I worked for an insulin company for 10 years but it’s not what I wanted at this point. And it goes on....

  • Armywife
    Armywife Member Posts: 449
    Oh, dang

    Girl, you deserve a medal for perseverance.  I'm really sorry you're having to endure all this.  Praying everything starts looking up soon.

  • BluebirdOne
    BluebirdOne Member Posts: 476 **

    The hits just keep on coming

    So now the valve on my bag keeps getting plugged with little clots because of course my urine is still the color of Hawaiian Punch because of all the trauma. So this is another challenge. I’ve tried to get an extra bag but apparently this is a newer one and none of the medical supply stores here have it. Of course, I was told I can drive up to Hackensack to pick up an extra bag. Why didn’t they give me one?  Of course they won’t mail one to me. And Medicare won’t cover the cost (about $30) of this particular bag even if I could find one. Of course I have the option of buying a box of 5 from the manufacturer. 

    So I thought this would happen, my endo put me on insulin. Just another thing, huh. I’m not terribly uncomfortable since I worked for an insulin company for 10 years but it’s not what I wanted at this point. And it goes on....

    So they left you with just one bag?

    Really, that is just ridiculous. Totally BS ridiculous. Hope you get it sorted out and have a dry night. My incontinence (which is better (at least I am not peeing on myself as much involuntarily)) has been a challenge. My kingdom for not peeing on myself. Cheese, hope things get better! 

    xoxo

    Denise 

  • SF73
    SF73 Member Posts: 316 **
    I am concerned about how big

    I am concerned about how big Amazon has become but considering the challenges you are having at your local medical supply stores, maybe it is not a bad thing that they have ambitions in medical supplies distribution. I am so sorry you are suffering because of the thoughtlessness of the medical team. 

    Cheese, you are such a fighter. I am so inspired by your fighting spirit. I know you will take care of yourself and be ready for the surgery in June. Glad that you have a plan in place to bring down your HbA1c level. Isn't it remarkable that there is a tool like insulin that will help you get there? Once you get to normal range you may not need it anymore. Wishing you all the best.  

  • SF73
    SF73 Member Posts: 316 **
    Cheese

    Cheese

    Does your endo know you are on Megace? I was answering another question on the board and thought of this.. "Megace may interact with insulin or oral diabetes medicine and may decrease the effects of these medications, and blood sugar levels may increase. If you have diabetes, monitor blood sugar and talk to your doctor if you notice unusual changes. Megace may interact with indinavir, or insulin or oral diabetes medications."

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    SF73 said:

    Cheese

    Cheese

    Does your endo know you are on Megace? I was answering another question on the board and thought of this.. "Megace may interact with insulin or oral diabetes medicine and may decrease the effects of these medications, and blood sugar levels may increase. If you have diabetes, monitor blood sugar and talk to your doctor if you notice unusual changes. Megace may interact with indinavir, or insulin or oral diabetes medications."

    Megace

    SF73, yes doc knows I’m on Megace. In fact, it’s megace that probably got me in this stinky diabetes mess. 

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    Holy ole moley!! Job (and his

    Holy ole moley!! Job (and his patience) have nothing on you. I think I would have gone nuts by now!! I am constantly amazed at how we are sent home to take care of ourselves when a few years ago an RN would have taken care of us IN a hospital. I remember being sent home from the hospital 23 hours after my gall bladder surgery. Within a few hours, I had a temp of 103. Headed back to the ER and 16 days later I was finally discharged. Next will be do-it-yourself surgery!! Here's a scalpel, here's some anesthetic, here's a chart of approximately where your uterus is; take it all and head to the backseat of your car. Call us if you need help!

    Our healthcare system is broken and we are the pieces - all shattered and damaged beyond repair. I can only hope that the doctors, nurses, other medical personnel and the people at the insurance companies who make these determinations are someday, put in the same position we have been put in! Karma is a b*tch!

    Hopefully, the insulin will work to bring down your A1c. 

    Love,

    Eldri

  • Rosesforever
    Rosesforever Member Posts: 44
    Questions

    I can’t believe what you’ve been through and what you are going through.  I‘d like to ask you few questions if you don’t mind? I posted a long TMI story earlier today under hyperbaric oxygen So I won’t bore yOu here. My last ct scan showed hydrourter on my right side. it shows mild lesion. I have no idea what this is or what it means. My oncologist thinks it AGAIN from radiation but not sure. She says it looks like someone stepped on a water hose. Why did you need a stent?? Sorry if that sounds dumb. I know just enough to make me dangerous. I’m pretty sure my urologist will follow it but I’d like to be prepared,  I work so I can‘t afford more time off.  the hyperbaric oxygen will be 5 days a week 4hrs a day for at least 40 visits and it’s in another city,,,, yuck

    any info will be gratefully appreciated  I wish you smooth treatments from now on although it sounds very complicated I Wish you well.  Hang in there. Be well. And please keep us posted. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933

    Questions

    I can’t believe what you’ve been through and what you are going through.  I‘d like to ask you few questions if you don’t mind? I posted a long TMI story earlier today under hyperbaric oxygen So I won’t bore yOu here. My last ct scan showed hydrourter on my right side. it shows mild lesion. I have no idea what this is or what it means. My oncologist thinks it AGAIN from radiation but not sure. She says it looks like someone stepped on a water hose. Why did you need a stent?? Sorry if that sounds dumb. I know just enough to make me dangerous. I’m pretty sure my urologist will follow it but I’d like to be prepared,  I work so I can‘t afford more time off.  the hyperbaric oxygen will be 5 days a week 4hrs a day for at least 40 visits and it’s in another city,,,, yuck

    any info will be gratefully appreciated  I wish you smooth treatments from now on although it sounds very complicated I Wish you well.  Hang in there. Be well. And please keep us posted. 

    Stent

    i needed a stent because I have a blockage in my right ureter. We think it’s from scar tissue from radiation but you’re never quite sure. That’s what started this whole chain of events. 

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    Imagine

    Picture all of us as an army marching in behind Cheese, hands on hips, glaring ferociously as we demand they treat our friend right. We would be formidable. 

  • Kaleena
    Kaleena Member Posts: 2,059

    Stent

    i needed a stent because I have a blockage in my right ureter. We think it’s from scar tissue from radiation but you’re never quite sure. That’s what started this whole chain of events. 

    Hi cheese

    Hi cheese

    are you able to have your ureter reimplantEd into your bladder?   I too had a blockage due to HDR brachy but mine was on my left side.  I got a stent which needed to be changed every 3 months.  I got tired of getting X-rays and going under anesthesia every 3 months. I did that for about a year and a half.  My urologist suggested the ureter reimplantment which I did.  Just wondering if that is something avs to you?

     

    wishing you all the best

     

    kathy 

  • barnyardgal
    barnyardgal Member Posts: 272
    ConnieSW said:

    Imagine

    Picture all of us as an army marching in behind Cheese, hands on hips, glaring ferociously as we demand they treat our friend right. We would be formidable. 

    Absolutely. Wish we could do

    Absolutely. Wish we could do that! Hope things go better, Cheese.

  • Lulu7582
    Lulu7582 Member Posts: 112

    Megace

    SF73, yes doc knows I’m on Megace. In fact, it’s megace that probably got me in this stinky diabetes mess. 

    HI

    Hi CQ,

    Ugh!!! Sending cyber hugs! Gosh the things we put up with hey!!! Yes, megace made me so hungry and I put on pounds while on that drug! Hope your days get better. One day at a time and we all keep moving forward. 

    I ended up in the hosp for fluids and to sort out my electrolytes!! Gosh I hate being in the hospital especially being an RN. Ugh!!! my veins are terrible so they had to access the port so you can imagine I was freaking the poor nurse out making sure she did sterile technique....but sometimes we just have to be our own advocate. Even the radiologist during the CT scan ...I told needed to "scrub my hub' for 5 minutes before he connected the contrast.... and I didn't care...I don't need any more complications thank you very much!!! 

    So CQ you go girl.... get the stuff you need to make life easier. Sending hugs xoxoxo

  • MAbound
    MAbound Member Posts: 1,156 **
    Hi Cheese

    I'm glad LuLu pulled this thread up. I've been thinking it's been awhile that you've been quiet. How's it going? Hoping that no news has been good news. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Awaiting surgery

    Thanks for concern. My surgery is scheduled for June 5. But I’m concerned that the contents in my nephrostomy bag after 4 weeks is still the color of red wine and smells like dead fish. However since I’ve had no fever or pain, no one seems very concerned. I’m on my 4th bag cause it keeps getting clogged with gunk. Shocking to think this is coming out of my kidney. Sorry if this is TMI but this too has led to some frustration. I think I’ve got the diabetes under control but I am a little concerned about how all this will come together for surgery (stopping the Megace, metformin, and Eliquis and regulating the insulin). I just hope all is fixed so I can move on to solving my next problem. 

    But all is not down. Went to NYC last weekend to see my son and am now in Ocean City MD ready to celebrate Memorial Day. But no swimsuit for me!  Looks like to be a glorious weekend. Power on!

  • MAbound
    MAbound Member Posts: 1,156 **
    Never Far from Thoughts

    Thanks for the update. You are never far from our thoughts and prayers while you are dealing with this. Power on, indeed!